By Coty Dolores Miranda
That’s what Heather, Joshua and Luke Ozga agree they’re going through.
“A war to save Luke’s life,” Chandler’s Heather Ozga said.
The family hasn’t asked to join this devastating battle against a virulent and rare form of lymphoma that has been attacking 9-year-old Luke Ozga since December 2019, but they bravely endured it.
He appeared to have overcome that initial attack, but relapsed a year later. A bone marrow donation from his older brother Josh proved successful and the family was in ecstasy.
In early July, Luke Ozga marked the 100th day after his bone marrow transplant. The family’s small feast consisted of two cakes, one with creamy white icing in which the happy youngster chose to plant his face to signify his happiness.
Less than two weeks later, on the 110th day after the transplant, the family hoped to conduct a routine examination to ensure all was well with devastating news: They were told that the bone marrow transplant that had been such an affliction for both brothers, had failed.
“They said we didn’t have many options left,” Heather Ozga said in tears.
Armer Foundation co-founder and president Jennifer Armer said a blood and fundraiser is planned for Sunday, Aug. 22 from 11 a.m. to 3 p.m. at UFC Gym, 3830 E. Ray Road, Chandler and called for raffle donations.
“I need raffle baskets to raise money for Luke to go to the Car-T therapy trial in Houston. And Heather will need money to live on, as she will most likely have to rent an apartment or some sort of housing,” Armer explained.
To sign up for the drive or donations, call Armer at 480-290-2977 or email firstname.lastname@example.org. Sign up for the blood collection at vitalant.org with the code: LukeOzga.
Sitting next to her in a social media post, as he did again in follow-up videos, was 12-year-old Joshua Ozga, the older brother who had just entered the 7th grade of San Tan Junior High School and who has proved that he is supernatural. is knowledge of the disease and various treatments, including chemotherapy.
On that 110th day of examination, the family discovered that Luke had traces of cancer in his bone marrow.
“I almost hit the floor,” she said.
‘When you hear that your child has cancer, it’s a parent’s worst nightmare; When he learned that he needed a bone marrow transplant it was heartbreaking, but we got through it and we thought it was a complete success,” Ozga explains.
“When you looked at him and saw him, he’s so positive, so smiley, he looked great, he felt great. So when we went in and I heard this and said, ‘Okay, now what?’ and they said, ‘We’re running out of options,’ which was beyond devastating.”
One of the options mentioned was a Texas clinical trial at Texas Children’s Hospital.
The family and their growing support group of friends and even strangers prayed that he would be accepted.
Last month, they learned that the lifeline of hope remained as Luke was admitted to the program, despite the 13-year minimum.
“Luke will be only the third patient with T-cell leukemia to receive this treatment in the US,” she said. “He has lymphoblastic lymphoma, not leukemia. However, we follow the leukemia protocol because because of the rarity of his cancer, they don’t have a protocol for lymphoblastic lymphoma.”
TCH was the first to offer cell therapy in pediatrics in 2012. The clinical trial Luke will participate in sometime in August is for an immunotherapy known as chimeric antigen receptor (CAR) T-cell therapy for children with advanced acute lymphoblastic leukemia.
This clinical trial is all about life or death,” Heather said. “We had the conversation with both guys, and Luke was crying and crying and crying.”
“It’s his last chance,” added Joshua.
Heather Ozga paused to wipe the tears.
“And it’s all about money too,” Joshua injected.
“Yes, it is, but all is,” his mother replied stoically.
The cost of fighting cancer is astronomical and can easily add to everyday stress. When Luke started chemo, the family learned that one of the two drugs that had to be taken at the same time during this time was not covered by insurance.
“For 60 pills, it was $7,748,” she revealed. “Of course we need a lot of help, financially.”
Helping the family through this financial quagmire is the Ahwatukee-based Armer Foundation for Children, a non-profit organization.
While donations can be made online elsewhere, Armer Foundation gives all the money donated to the family. There are no processing fees and donations are tax deductible.
In addition to the hospital stays, medications, and procedures, there are so many other costs that the family will face, including the loss of income for Heather Ozga who left her job at MD Anderson Cancer Center when her son was initially diagnosed and the upcoming stay in the hospital. Houston.
It has not yet been decided whether 12-year-old Josh will need to take the family to Texas Children’s Hospital at the end of August.
“We found out that Josh most likely won’t have to go to Texas because they can take blood here at PCH and send it there,” Heather Ozga said. “Only if it’s not good enough, or contaminated, should Josh go.”
Ozga expects the trial in Houston to take up to six weeks.
She said it appears that another donor will be used for the next blood marrow transplant that will take place after the CAR T clinical trial. The family urges residents to research and then enter the Be The Match database to find a bone marrow donor for this procedure.
Ozga acknowledges that many medical terms are difficult for the average citizen to understand, including the difference between leukemia and lymphoma.
But if you deal with them month after month, year after year, it becomes a second language, one that even Josh has mastered.
“I’ve had to learn more about cancer in the past year and a half than I ever wanted to. The drugs alone are astounding, along with their side effects,” she said. “The easiest way to describe the difference between leukemia and lymphomas is that lymphomas are usually masses.”
“When Luke was first diagnosed in December 2019, he had a massive tumor on the front of his heart that had filled his lungs with tumor fluid and had collapsed his lungs so he literally couldn’t breathe. He was breathing 41 to 48 breaths per minute,” Ozga continued.
“It was horrible and it had spread to his lymph nodes in his abdomen and his kidneys. Therefore, his cancer is rarer and more difficult to remove because it is aggressive and growing rapidly.”
While the focus is on doing everything possible to save her son’s life, Ozga is understandably concerned about the rising cost of cancer.
“I have insomnia and anxiety attacks,” she admitted. “Cancer is so devastating and so expensive. People should not look at the amount of money being donated to the Armer Foundation or GoFundMe pages because I promise you it will run out in the blink of an eye.”
Recent cancer-fighting figures indicate that a course of chemotherapy can range from $10,000 to $100,000 or more. Luke has had countless rounds.
Bone marrow transplants are one of the most expensive procedures, with studies showing it can cost up to $200,000 per transplant. Luke has had one and is facing two more.
The upcoming clinical trial will significantly increase costs thus far.
As with the chemo drug, some insurance plans don’t cover that cost because they’re considered “experimental.” Such trials can cost $41,000.
As excited as she was when she found out last week that her youngest son has been approved for the Houston clinical trial, she looks for ways to get there, stay there, and be strong for her son as he goes through all this on a stranger. place .
“I’m trying to figure out what the costs will be with our trip, but I haven’t been able to figure that out yet. I don’t know if food or gas will be covered, whether our flights or a rental car will be. I’m trying to get answers now, so I’m prepared,” she said.
“I feel like we’ll have to drive to bring all the necessary gear we’ll need for our extended stay, but I’m concerned about the age and mileage of my vehicle, so I’m still trying to work out all the details. “
Even as a single mom, she said she knows she’s not alone. In addition to her parents and sister and friends – some of whom she has never even met – she said her faith makes it possible to go on every day.
“Josh and I go to our church every night and pray at the beautiful cross and ask our Father to save Luke’s life,” she said. “I was born and raised Catholic and go to The Grove. I sleep with my rosary, I pray a million times a day. God is so much a part of our lives.”
Fundraising is serious business for the family as they face the subsequent months of travel, treatments and more.
“We need all the help we can get to save my son’s life,” she admitted candidly. “Everything helps right now.”
To help the Ozga family, you can make a tax-deductible donation at ArmerFoundation.org.